Objective: To assess the attitude of Creutzfeldt-Jakob patients relatives and of relatives of cognitively unimpaired individuals towards dementia research by a questionnaire survey.
Methods: 42 relatives of cases and 41 controls who were interviewed within the german part of the European Union collaborative study of CJD were asked to answer structured questions concerning their personal attitude towards three hypothetical projects: a diagnostic research project without personal benefit, a project with possible therapeutic option and a study of hereditary dementia.
Results: 31 relatives of cases and 26 relatives of the controls were willing to participate in this survey. In both groups the willingness to participate in dementia research is high. Research without approval of patients or relatives is rejected in most cases. Relatives want to decide to which extent genetic results are used for scientific or personal purposes.
Conclusions: Although research with (and for) demented patients is restricted by the law in many countries to certain limits, relatives are willing to participate in these efforts to a greater extend than expected. As long as the responsible physicians will respect their demented patients as severely ill human beings, the view towards research is this field might be as positive as shown in this sample.